Disrupted Breath, Songlines of Breathlessness

Home , Taken for Granted

Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from Disrupted breath, songlines of breathlessness: an interdisciplinary response Alice Malpass,1 James Dodd,2 Gene Feder,1 Jane Macnaughton,3 Arthur Rose,4 Oriana Walker,5 Tina Williams,6 Havi Carel6

1Centre for Academic Primary Abstract collaborates with the British Lung Foundation, Care, Population Health Health research is often bounded by disciplinary people affected by lung disease and people who use Sciences, Bristol Medical School, University of Bristol, Bristol, UK expertise. While cross-disciplinary collaborations are their breath in interesting ways (eg, free divers). It 2Academic Respiratory Unit, often forged, the analysis of data which draws on more is an interdisciplinary project, working to find new University of Bristol, Southmead than one discipline at the same time is underexplored. ways of answering questions about breathing and Hospital, Bristol, UK 3 Life of Breath, a 5-year project funded by the Wellcome breathlessness and their relationship to illness and Centre for Medical Humanities, Trust to understand the clinical, historical and cultural well-being. School of Medicine, Durham University, Durham, UK phenomenology of the breath and breathlessness, brings We may have gained a multifaceted perspective 4Department of English, together an interdisciplinary team, including medical on the phenomenon of breathing by adopting an University of Bristol, Bristol, UK humanities scholars, respiratory clinicians, medical 5 interdisciplinary approach, but in what ways are Berlin Center for the History anthropologists, medical historians, cultural theorists, we interdisciplinary, interactive as opposed to of Knowledge and Humboldt University, Philosophische artists and philosophers. While individual members of being simply additive—the descriptor attributed Fakultät, Institut für the Life of Breath team come together to share ongoing to multidisciplinary projects? Perhaps we have Geschichtswissenschaften, work, collaborate and learn from each other’s approach, erred towards becoming more of a transdiscipli- Humboldt-Universität zu Berlin, we also had the ambition to explore the feasibility of nary project, defined as being multilayered, “tran- Berlin, Germany integrating our approaches in a shared response to the 6Department of Philosophy, scending existing categories” by “showing how University of Bristol, Bristol, UK same piece of textual data. In this article, we present our different epistemes might be productively inter-re- pluralistic, interdisciplinary analysis of an excerpt from lated”.3 The Life of Breath team have collaborated Correspondence to a single cognitive interview transcript with a patient on conference panels, symposia and public engage- Dr Alice Malpass, Centre with chronic obstructive pulmonary disease. We discuss ment events, as well as coauthoring academic for Academic Primary Care, the variation in the responses and interpretations of the publications and reports. Here is the first time we Population Health Sciences, data, why research into breathlessness may particularly Bristol Medical School, have come together to describe an interdisciplinary University of Bristol, Bristol BS8 benefit from an interdisciplinary approach, and the wider analysis of a transcript of textual data. The data, 1TH, UK; implications of the findings for interdisciplinary research representing the mismatch between how breath is a. malpass@bristol. ac.uk within health and medicine. measured on a respiratory questionnaire and how Accepted 10 May 2019 respiratory patients experience their breathlessness, are already transdisciplinary, using respiratory ques- http://mh.bmj.com/ Background tionnaires to explore the dissonance between clinical 4 If we wear theories in our boots,1 it is our disci- expertise and expertise by experience, exploring 5 plinary training which provides us with a compass ideas of “testimonial injustice” in the clinic. The and binoculars. It is our disciplinary trainings we interdisciplinary analysis that we propose is under- rely on to orient us to the research question and explored because there is an explicit combination identify a direction to travel as we traverse the of analytical tools from paradigms where epistemo- 6

landscape of knowledge-making. Sometimes we logical assumptions vary. For example, whereas a on October 1, 2021 by guest. Protected copyright. may become curious to see what happens if we put literary scholar reads the textual data as a language the disciplinary apparatus down and walk unhin- object, an anthropological scholar reads the textual dered into other terrains, perhaps even stumble on data as a co-created encounter of meaning-making. common (disciplinary) ground; at different times Indeed, a recent survey of interdisciplinary research our safe arrival (career progression, grant success) found it more evident across different scientific depends on our disciplinary orientation. In this disciplines while collaboration across “distant disci- article, we were interested in what happens to disciplinary divisions” is much more rare.7 plinary identities when we work across disciplines Discussions about methodological pluralism often and invite “different vantage points [from] which imply that methodological rigour depends on the to view a topic”.2 maintenance of boundaries between disciplines and © Author(s) (or their their methods. The permeability of those bounda- employer(s)) 2019. Re-use ries is seen to either threaten rigour or gloss over permitted under CC BY. The Life of Breath project Published by BMJ. The Life of Breath project brings together methodological difference, especially when some researchers from the following disciplines: medical argue for the “mixing at the level of data” and also To cite: Malpass A, humanities, philosophy, anthropology, history of “mixing of the realist, interpretative and construc- Dodd J, Feder G, et al. 8 Med Humanit Epub ahead science, English, respiratory medicine, general tionist paradigms”. In contrast to critiques of this 9 of print: [please include Day practice, dance and drama, arts and health, as well “bricolage” is the view that that resistance to meth- Month Year]. doi:10.1136/ as collaborators who are composers, visual artists, odological pluralism runs the risk of methodolog- medhum-2018-011631 writers, poets and music therapists. The project ical fetishism.10 To counteract such fetishism, others

Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 1 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from advocate methodological emancipation, involving de-coupling living with respiratory illness were consulted through regional qualitative methodologies from their roots in social science Breathe Easy groups and public engagement activity. The find- and embedding them instead in the disciplinary worldview of ings from this article will be made available in a shortened format applied health research.11 Some go further still, arguing that to chairs of the Breathe Easy groups who were involved in the methodological boundary construction should be conceived as PPI consultation process. immutable, involving an osmotic process in which “elements of particular analytics move in and through one Transcript analysis another […] when boundaries are conceived as mobile and those Each coauthor responded to the textual data excerpt, drawing between methods are understood as determined by the object of 12 on their disciplinary context and its methodological approach. knowledge”. Coauthors, as analysts, were given very little instruction except In the Life of Breath project, our object of knowledge is the to write a reflective response to the data, including discussion lived experience and perception of breathlessness. We draw on on how their disciplinary context greets the subject of breath- multiple disciplines to reveal how breath and breathlessness are lessness and whether this has been influenced in any way by the portrayed, for example, in literature or historically in the clinic interdisciplinary context. in order to make the experience of breathlessness less invisible to the public and clinical gaze. This article explores how five disciplinary contexts brought The interviewee: a breathless gaze together in the Life of Breath project respond differently to The interviewee was a man in his mid-seventies who for the last the same data. The culture of our discipline is the binoculars 5 years had been experiencing breathlessness. The interviewee through which we ‘see’ the data we encounter. We were curious had a diagnosis of a chronic respiratory condition. He had to see if the condition and context of an interdisciplinary study started smoking at the age of 26, had stopped in his sixties but had influenced the tint of our analytic gaze and the extent, if any, taken it up again in the year before the interview because he of transmethodological osmosis.13 felt hopeless. At the time of interview, he was more reflective though things were still obviously difficult for him. He was only able to walk eight metres before becoming painfully breathless. Research methods He used a mobility scooter to accompany his wife shopping The qualitative interview data for this article were collected by and could not leave the house without her support, apart from AM as part of the Life of Breath study. The interviewee was going to the post box and back a few metres from his home. He recruited from a Breathe Easy group and had been diagnosed was well supported by loving friends, part of a local Breathe with chronic obstructive pulmonary disease (COPD) 5 years Easy group, when he was well enough to attend. We re-produce 14 previously. The study used cognitive interviewing techniques here (box 1) an excerpt from a verbatim transcription of him to explore patterns in answer mapping and comprehension of thinking aloud his thoughts as he ponders how to respond to a recently developed scale for measuring breathlessness, the two questionnaire items on the MDP: “my breathing requires 15 Multi-dimensional Dyspnoea Scale (MDP). One transcript was muscle work or effort” and “my breathing requires mental effort selected for the interdisciplinary analysis after an excerpt from it or concentration”. As he thinks aloud, he repeats the phrases of sparked a lot of discussion across the research team at a meeting the questionnaire items many times. in 2016 (at which all the coauthors for this article were present). The transcript is part of a bigger data set which has been anal-

Findings http://mh.bmj.com/ ysed thematically by AM for another article.16 The selected tran- Anthropological response script resonated thematically with a subset of other transcripts “My breathing requires mental effort or concentration”, “My in the larger data sample. It is feasible that the findings from the breathing requires muscle work or effort”. Why are these ques- analysis presented here could subsequently be developed into a tionnaire items problematic? Is it because both raise questions transdisciplinary thematic framework and applied in the analysis on the boundaries between a sense of ‘me’, ‘my breath and/or of other interview transcripts in the data set by one researcher. body’ and a conscious ‘I’? Or what Analayo, writing from the This could be one method to adopt for future projects wishing meditative tradition, describes as the conditional interrelation- on October 1, 2021 by guest. Protected copyright. to use transdisciplinary approaches to analysing data. For this ship between physical and mental phenomena: “as breathing is project, the selected transcript was transcribed, anonymised and a process that can take place either involuntarily or deliberately, sent by email to all the coauthors. Using a short excerpt from it stands in a distinctive conditional position in regard to body one interview transcript allowed us to explore the interview- and mind, and therefore offers an opportunity to contemplate ee’s account from the perspective of multiple disciplines while the conditional interrelationship between physical and mental creating both continuity for the reader of the finished article, as phenomena”.18 well as opportunities to more easily compare how disciplinary For this man living with COPD, the questionnaire items on responses overlapped or not. This approach has been success- muscle effort or mental effort trigger a reflective discussion fully executed recently in this journal.17 on selfhood and the breath as he explores “who is breathing and who am I when I am struggling to breathe”. Pathology and Patient and public involvement breathlessness, like meditation, appears to offer its own doorway The development of the research question for the larger cogni- into contemplating the interrelationship between physical and tive interview study from which the data explored in this article mental phenomena. were taken was developed alongside patients living with COPD. He begins by noticing that as soon as he becomes breath- Patient and public involvement (PPI) experience suggested that less, the “normal” self he identifies with is absent: “he’s gone”. clinicians often fail to enquire about the symptom of breath- These two items are problematic in part because his respiratory lessness in primary care settings and that the experience of limitation is not ‘who he is’ all the time. His pulmonary disease completing questionnaires in clinical settings does little to meet disrupts his biographical flow several times a day.19 He is fine concerns and needs about breathlessness. Meetings with adults when at rest, reading a book, but could not walk eight metres

2 Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from Further on in the account, the interviewee mimics gasping Box 1 The interviewee: data excerpt breaths and asks “is that me? My muscles working or my brain telling my lungs to start working?” He separates out his sensory ‘You said I was normal looking, quite fit for a 76 year old. And experience (gasping) from a sense of person (me), from his phys- then to walk eight metres, come back, he’s gone… When you ical body (my muscles) and all three from his command body breathe, do you make a conscious effort of trying to breathe? (my brain). We see in his statement “my brain is making me No. I don’t make a conscious effort of trying to breathe, except breathe” and “my lungs aren’t telling me to breathe” that there when I walk that eight metres, then I’m gasping for breath. And is an expressed sense of ‘I’ (selfhood) that is separate from his (takes a deep breath) I’m not making a conscious effort to do it. bodily organs (lungs and brain) and bodily processes (breathing). Even after I’ve walked that eight metres. I’m sat here now, I’m, The organs are given agency, they can force action, they can I’m shaking. I’m just trying to breathe normally to get my breath ‘make’ and ‘tell’ or ‘not tell’ but underneath this experience is a back so as (deep breath) I’m acting normally. (“My breathing perception of a fixed ‘me’. Why does this matter? requires muscle work or effort”?) I don’t think it, I don’t think It matters because according to the logic of early Buddhist it does. I, I think, if you were—if that was a broken leg and you thought, what causes suffering is our attachment to the idea of a were trying to get that broken leg back quicker or better, you’d fixed self and a reification of perceptual and sensory experience exercise it… as ‘mine’. This is not dissimilar to general tenets of therapeutic It’s the same with your breathing. You can’t exercise your process which involves being able to stand back from the part of brain—or how can you? You can do a puzzle or something like us that causes our suffering and see it differently. It “implies the that to keep it in working order. But if you—if I stop breathing conceptual division of the self” in which the part of us which now, I’m dead. And there is no conscious effort. It’s, it’s, er, my causes our suffering, in this case breath or lungs, are “given brain is controlling my breathing, making me breathe. I’m not a personality with [their] own needs and will.”21 Crucially, making a, er, a conscious effort of using muscle to work or, or suffering is eased when there is a reconciliation of the divided effort. I suppose I am… self, “a reintegration of the self’s two parts […] a self which Right ‘when exercising, my breathing requires muscle effort needs to become conscious of its internal conflicts to bring or work’, I don’t think it does, it just (mimics) ‘gasps, gasps’, is them into relationship and eventual harmony”.22 Elsewhere, that me? My muscles working or my brain telling my lungs to we have explored how arts and health approaches may facili- start working, but that’s not muscle effort, well I don’t think tate the journey from ‘breath as antagonist’ to reconciliation.23 so anyway (sighs), to me my lungs haven’t got any muscles, Responding to even a short excerpt of textual data demonstrates have they? Your diaphragm, if you breathe in, deeply from that breathlessness is more than just a vital symptom, it opens your tummy up, that pushes your lungs up and empties your up questions on ‘what makes a person’. As Faull and colleagues lungs and then back down again, but that’s your diaphragm suggest, breathlessness needs to be treated as something more working, not your lungs working isn't it… My breathing requires than pathophysiology: “the point is to view breathlessness as intense (clears throat)—I’m not getting nothing, my chest feels something that might not directly correspond to airway patho- constricted, my, er—I am breathing a lot, yeah, I could say physiology and which may need to be treated both in parallel 10 (on the questionnaire) to every one of them (items) if I’m and independently of the lungs”.24 exercising. But if I’m sat here now, it doesn’t take any effort to breathe. So I, I could do two sheets of that, one when I’m exercising and one when I’m not. No, I mean if I put resting Philosophy response http://mh.bmj.com/ there, (coughs) reading, I could put no effort at all, it, it just From a philosophical–phenomenological perspective, illness happens. Um, I mean a little child when he’s freshly born, he changes the lived experience of the ill person. It disrupts routines doesn’t make any specific effort to breathe. I mean it’s a natural and habits and draws attention to bodily phenomena that are thing to breathe. I mean. otherwise tacit.25 The body’s transparency, to use Sartre’s term, I don’t think breathing does require muscle effort, except, if is replaced by an opaque, troubling presence. The body can no you’re breathless, and if you are exercising, you are trying to fill longer be taken for granted and bodily functions require atten-

your lungs up and calm down, you’ve seen what i’m like after tion, thus occluding the previous transparency. Within this on October 1, 2021 by guest. Protected copyright. exercising, and you (breathes deeply) then you’re trying to get, framework, the interview excerpt reads like a lament for that fill your lungs and calm down. I mean you’ve seen what I’m like lost transparency, accompanied by a sense of confusion, perhaps after exercising, you come back in again and you go (breathes disorientation, as the interviewee tries to make sense of his deeply) and you’re gasping for breath, you take deep breaths, as disrupted embodiment. In this commentary, I’d like to point to much as you can until it gets painful, to try and breathe…‘my the series of rifts that characterise breathlessness, which I have breathing requires mental effort’, no it doesn’t, it just happens, also analysed recently elsewhere.26 my brain is telling me that, my lungs aren’t telling me to The first is the gap pointed out by the interviewee between breathe”. normal (resting) breathing and pathological (on exertion) breathing. The interviewee states “I could do two sheets [questionnaires] of that, one when I’m exercising and one when I’m without getting extremely breathless. What we see unravelling not”. This expresses the duality of his breathing experience: in this extract is a contemplation of his two breath selves. Each when resting, it is restful, easy, automatic, effortless, but becomes breath self could complete its own respiratory questionnaire restless, stressful, difficult, explicit, on exertion. While normal because experientially they are two separate persons who appear breathlessness feels controlled, willed and often pleasurable, unreconcilable. There is resonance here with work on bodily pathological breathlessness is felt as loss of control, frightening doubt that distinguishes the state of bodily certainty, in which and distressing. I believe that pathological bodily experiences are the possibility of actions is taken for granted, from bodily doubt, not simply extreme forms of normal bodily experience but are where the certainty is replaced by a sense of uncertainty about underpinned by different qualitative and interpretative elements. whether the body can be trusted to perform as before.20 Healthy breathlessness is temporary, normal and expected.

Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 3 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from Pathological breathlessness is chronic, abnormal (dispropor- moments of dissociation help the interviewee to address deeply tionate to the task, eg, walking eight metres) and unexpected. It affecting conditions in a clear and honest fashion by taking them is out of the ordinary. I think that is what the interviewee means at some remove, they are also stylistically significant since they when he speaks of ‘two sheets’. also perform precisely that alienation from the self that seems Another rift is revealed in the conflicting attitudes and to happen after the interviewee walks eight metres: “he’s gone”. emotions characterising the interviewee’s relationship to his Corresponding to these moments of stylistic transfers in iden- breath. He is unsure whether muscles are involved in breathing; tification are those moments when the interviewee reflects on he is uncertain as to whether one can exercise one’s brain; he the apparent autonomy of his organs. The interviewee describes finds the difference between breathing at rest and on exertion his brain as “telling” him to breathe, as if this most central of baffling. The text is full of gaps, gasps, abrupt halts, question organs were not fully incorporated into his self. This site of marks: ‘is that me?’ […] ‘my lungs haven’t got any muscles, control is contrasted with the lungs, which “aren’t telling me to have they?’ […] ‘I don’t think it, I don’t think it does’. It reads breathe”. These are linguistic parallelisms: semantically and/or a little like a Beckettian monologue: full of about-faces, abrupt syntactically similar phrases whose similarities highlight concep- stops, gaps, unfinished sentences. The text itself is breathless. tual continuity or discontinuity. In this case, different body parts The interview performs the breathlessness of the interviewee. are paralleled through an instance of personification. In general, The interviewee tries to describe the experience of breathless- personification is the ascription of human qualities to nonhuman ness, but language seems to fall short of the task. “… and you, entities; here, it is the ability to speak. In this case, the parallel then you’re trying to get, fill your lungs and calm down. […] you emphasises the interviewee’s understanding that the locus of come back in again and you go… and you’re gasping for breath, control for breathlessness is the brain. you take deep breaths, as much as you can until it gets painful, However, on closer analysis of this parallel against other to try and breathe…” The text is textured by sounds of breath: references to control, the emphasis shifts from determining the deep inhalations, throat clearing, gasping and sighing. These are locus of control to rendering it indeterminate. When imagining all breath sounds, voiced exhalations. And they punctuate the connexions between breath and the body, the locus of control is text excessively, mirroring the continued yet failed attempt to difficult to identify. While “my brain is controlling my breathing, tame, calm and understand the breath. making me breathe”, he reflects that “I’m not making a, er, a The final rift is that of failure(s). The rift between attempting conscious effort of using muscle to work or, or effort”. He imme- to understand breathlessness and failing to grasp it. And between diately contradicts this assertion—“I suppose I am…”—precisely attempting to control the breath and succumbing to breathless- because “that’s your diaphragm working”, he muses, “not your ness. Given this internal turmoil, it is not surprising that breath- lungs working, isn’t it”. If parallel phrases about control helps lessness remains poorly understood by health professionals and to track the way in which its locus shifts, the consequence is those who do not suffer from it. This excerpt exemplifies how to repeat those identification transfers already mentioned: “is difficult it is to speak about breathlessness and how difficult it that me? my muscles working or my brain telling my lungs to is to speak when breathless. The two difficulties intertwine in start working, but that’s not muscle effort, well I don’t think so profound and complex ways, making breathlessness invisible. anyway (sighs), to me my lungs haven’t got any muscles, have What the interview enacts is the difficulty of expressing this inti- they?” The interviewee’s repeated reference to “muscle effort or mate yet overwhelming experience. It is hard to put into words work” frames a problem that exceeds its terms. “Doing work” and it is also hard to get the words out when one is so short of may be repeated through the passage, but it fails to describe, breath. consistently, the experience of breathlessness, an experience that http://mh.bmj.com/ seems to unmoor subjectivity and agency in language as much as in life. Literary response References to breath, when they appear in literary texts, bear an uncanny resemblance to markedness.27 Markedness is a contested Clinical response linguistic category that differentiates two forms of an utterance: The process of completing the questionnaire appears to prompt

its dominant, assumed form (unmarked), and its variant, whose the interviewee to reflect more closely on their control of on October 1, 2021 by guest. Protected copyright. deviation from the dominant marks it as different. When Nikolai breathing. Intuitively, this feels like a good thing. However, this Trubetzkoy developed markedness theory, in his groundbreaking can lead to overinterpretation of the questions. Clinical ques- work on phonology, he identified unmarked, or dominant, terms tionnaires often prompt the person completing them not to as those utterances whose sound features deviated least from do this and to go with the most instinctive answer. In general normal breathing.28 In literary texts, characters are assumed to practice, breathlessness questionnaires are not used to assess the breathe. Any reference to breath is therefore marked: it plays patient. This potentially gives the patient more opportunity to some role, significant or not, in the development of a narrative, express their experience of breathlessness in their own words. character or plot. A parallel concern with markedness emerges in However, in the absence of routine questions about breathless- the interview. “See”, he says, “you could write a book, like that, ness, it means that GPs rarely ask about this experience and end on how you’re feeling and everything else, but you couldn’t put up with even less information about the impact of breathless- it down on one simple form”. ness on the patient’s life than that (imperfectly) captured in a The text challenges the interviewee’s continued, uninterrupted respiratory questionnaire. In this interview, the patient expresses sense of identity as a sufferer of breathlessness by using different profound, repetitious loss. He has lost the “normal” man he was pronouns to refer to himself. He begins the passage by referring before his COPD severely limited his ability to walk more than a to himself as “I”, a person who looks fit for a 76-year-old, only few metres without the onset of breathlessness. The interviewee to shift that identification to “he”: this person, “he”, is “gone”. expresses frustration with the questionnaire “I could say 10 to At several moments, the interviewee will invoke himself in the every one of them if I were exercising…”, “I could do two sheets first person, but go on to describe his experiences of breath- of that, one when I’m exercising and one when I’m not”. It is lessness as the conditions of a second person “you”. If these almost impossible for a questionnaire to capture breathlessness

4 Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from in every situation. He goes on to articulate clearly the limita- the breath has a history. And that history reveals something about tions of questionnaires in capturing lived experience: “You could how much freedom is imagined to be possible for the human body write a book, like that, on how you’re feeling and everything and, therefore, for a human being. else, but you couldn’t put it down on one simple form”. Clini- Much like the interviewee, the Roman physician and philos- cians, particularly specialists, can be justifiably criticised for opher Galen thought of the muscles as “the instruments of the being too focused on the physical, ignoring the psychosocial will”, an imagination of the physiology of human autonomy with and by interpreting symptoms through their particular clinical profound implications for many other aspects of body and self.29 interest (heart, lungs). However, patients often bring similar Kuriyama argues that making the muscles the embodied source of prejudices into the clinic. Demonstrated, we think, in this case by the human will was tightly linked with anatomical thinking itself; assuming that all the experience of breathlessness relates exclu- the idea of the body as a collection of tools or “organs”. Galen sively to the lung, ignoring the role of the muscles of respiration. recognised that breathing could manifest “automatically”, but he Many passages in the transcript focus entirely on the lung, often also thought of volitional breathing as deeply rooted in the human detailing the anatomy, disconnecting this from any other part of organism; an apocryphal story he first told would reappear in the body. various forms well into the eighteenth century: slaves, lacking any In critiquing the question about mental effort or concentra- other tool of protest, foiled their masters’ plans by holding their tion being required for breathing, the interviewee recognises the breath until they died.30 Breathing was taken to be such a volitional subconscious automatic control of breathing, but dismisses the thing that it gave any breather ultimate determination over their role of conscious control, not sharing the experience of some own life or death. patients with chronic breathlessness who speak of having to But by the late nineteenth century, long unquestioned modes make a conscious effort to take deeper breaths. Clinically, we of human uniqueness including the faculty of “will” were under know that there is both subconscious automatic control of respi- threat from new forms of materialism, and mechanistic and ration, taking place at the level of the brain stem, driven by phys- reductionistic models of body and self, including certain inter- iological feedback from the lung and cardiovascular systems. pretations of Darwinism.31 When it came to human breathing, The conscious control of breathing takes place in the higher in the 1889 edition of Charles Darwin’s The Expressions of the cortical centres, often sharing pathways related to emotion Emotions in Man and Animals, a work in which he approached and the processing of pain. it is interesting to observe that the apparent human emotional and expressive uniqueness from an interviewee conflates muscle effort with conscious control of evolutionary perspective, he wrote that breathing was funda- breathing: “My breathing requires mental effort or concentra- mentally, and ideally, not wilful: “Respiration is partly voluntary, tion, no, it doesn’t. It just happens. My brain is telling me that. but mainly reflex, and is performed in the most natural and best My lungs aren’t telling me to breathe”. manner without the interference of the will”.32 Breathing was “Um, you take deep breaths—well, as much as you can until “mainly reflex”, much as the interviewee described. it gets painful”. We often neglect to actively enquire about pain Having closely studied both Charles Darwin and Charles when we meet people in clinic with lung disease. Perhaps incor- Bell’s anatomies of expression,33 in 1905 R. Tait McKenzie, a rectly leaving this exclusively to the cardiologists pursuing the Canadian professor of the new discipline of physical education, diagnosis of ischaemic heart disease or heart attacks. However, and, as it happened, an amateur sculptor, created a series that there is empirical evidence that people living with advanced illustrated the stages of the peculiar fatigue of breathlessness; COPD report chest pain as one of the most frequent symp- it was, he wrote, a composite of Charles Bell’s work on the toms. In general practice, we do ask about pain in relation to “anxiety associated with bodily distress” together with the addi- http://mh.bmj.com/ 34, 35 breathlessness, but exclusively to consider the possibility of tion of “gaping mouth and expanded nostrils”. He anato- angina. Reading the transcript was a reminder to me that I do mised breathlessness in the following way: not enquire about pain in the context of chronic breathlessness. “In this mask (no. 2 in figure 1) we have the typical face of The invisibility of breathlessness at rest is a theme emerging the breathless man. The smoothness of the forehead is broken from this interview. It reminds me of the times that I have not by wrinkles spreading out from the inner end of the updrawn seen how burdensome chronic breathlessness is when the patient eyebrows, where the general direction is just the reverse of that is sitting comfortably in front of me. I think the interviewee seen in violent effort; they are drawn upward and inward by the on October 1, 2021 by guest. Protected copyright. might be telling the interviewer about the invisibility of breath- corrugator supercilii, the muscle of pain, which always acts in 36 lessness, particularly at rest: “I mean you’ve seen what I’m like grief, mental distress, anxiety, and bodily pain”. (p.53) after exercising: you come back in again and you go (breathes It is interesting that for the earliest of McKenzie’s sources, the deeply) and you’re gasping for breath”. early-nineteenth-century anatomist Charles Bell, the corrugator supercilii muscle was “a muscle peculiar to human expression”.37 Though Darwin would later argue against this view, for Bell human The body historical response facial expression was a matter of human uniqueness, and one of The participant experiences his most “natural” and effortless the key muscles at play in the peculiarity of human pain was a breathing to be like that of a baby, entirely lacking in any kind of central feature of the pain of breathlessness, the corrugator super- painful intention or reflexivity: “I mean a little child when he’s cilii: “The most remarkable muscle of the human face […] it knits freshly born, he doesn’t make any specific effort to breathe. I mean the eyebrows with an energetic effect, which unaccountably, but it’s a natural thing to breathe”. The participant seems to feel that irresistibly, conveys the idea of mind”.38 Before breathing became all is well when breathing happens of its own accord, “naturally”, a reflex, or perhaps, in the case of breathlessness, a reflex gone under control of the “brain”, and not the “muscles” (which he wrong or pushed beyond its reasonable limit, the pain of breath- associates with volitional breathing or breathing of which he is lessness wasn’t just any pain; it was a kind of pain with a particular painfully aware). Both current physiological models and forms of human element. It conveyed “the idea of a mind”. common sense, as expressed by the breathless interviewee, take Our imaginations of the body matter. Most poignantly, as breathing to be fundamentally involuntary, governed by the central we see behind the account of the interviewee’s breathlessness, pattern generator of the brainstem. But this way of experiencing they instruct us in how to suffer and determine the nature and

Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 5 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from participant in the production of knowledge and ‘data’. Prior to joining the Life of Breath project, my work had explored mindfulness based approaches to supporting those living with breathlessness. Mindfulness comes from a Buddhist epistemology in which the breath is used as an object of meditation because it is seen as a doorway into self-observation. As a direct encounter with the ideas and work of OW through the Life of Breath project, I became interested in how breathlessness (as opposed to a meditative breath) may also lead someone to explore personhood. I approached the data with ideas about how we breathe life into personhood and with these ideas in mind, subsequent encounters with the data inspired an enquiry into how we differ- entiate (if we do at all) between ‘me, my breath and I’.

The philosopher’s gaze HC: Philosophers are interested in concepts and ideas and how these shape our understanding of the world. The approach offered here, a phenomenological approach, has much in common with qualitative research. It aims to describe, not explain. It views the person as part of a complex web, and hence as situated within a world and engaged with other people. First and foremost, it views the person as embodied and her terms of embodiment as the foundation and structure of her experience. My textual analysis is an example of a philosophical approach to a text. I was looking for key words and ideas that could then be abstracted into a more general theme. In this case, the theme of ‘rifts’ emerged from my reading of the text. The interdisciplinary research practised by the Life of Breath team has been profoundly significant for me. We set up the project with the belief that if we want to shed light on a phenomenon such as breathing, that can only be done using a network of disciplines and approaches. Being able to learn from colleagues from other disciplines gave me a critical perspective on my own F igure 1 The Facial Expression of Violent Effort, Breathlessness, and 53 discipline, as well as being deeply edifying in ways that are very Fatigue different to engaging with others within my own discipline. TW: As a philosopher, approaching breathing and breathlessness from the philosophical tradition prepared me to delve into meaning of that suffering. History reveals that these models historical accounts of the breath as pneuma in the pre-Socratics, http://mh.bmj.com/ change across time and place, and yet they are so intimate as for example, through to presentations in contemporary philos- to be hardly distinguishable from our very selves. But there is ophy. However, the paucity of such explorations in Western indeed a tiny gap, a niggling suspicion: “‘gasps gasps’, is that philosophy revealed that not only did the breath need to be me?… my lungs haven’t got any muscles, have they?” To look re-covered and drawn forth, but that the work uncovered within historically at the body is to look into that space of possibility. this multidisciplinary group were vital for this. I found myself When we consider the multiplicities of human breathing, we are holding my breath when reading the data excerpt, echoing Levi- on October 1, 2021 by guest. Protected copyright. at once considering the possibilities for human autonomy: which nas’s reflection that the lungs may be the truly ethical organ: it is of many possible views gives us the most freedom to face the through the breath in the encounter with the Other that we can inevitability of breathlessness? be summoned to put our own agency and interests behind those of the Other.40 And what could be more ethically demanding From methodological pluralism to than watching another gasp for breath? When someone is in multidisciplinary gaze such distress, struggling for breath, that demand is certainly We have chosen to frame the responses to the data in terms undeniable. of disciplinary gaze as opposed to methodological approach because each of the researchers responding to the data have an epistemological position partly determined by their disciplinary The literary scholar’s gaze 39 AR: My response is conditioned by my training as a literary training. The work reported in this article took place in the scholar who focuses on rhetoric, style and critical theory. I read fourth year of the Life of Breath project. It is likely that by this the text first and foremost as a language object, conditioned point in time a greater understanding of each other’s disciplinary by narrative coherence, linguistic parallelisms and metaphor. gaze had already occurred. I encounter the interviewee primarily as a character, whose The anthropologist’s gaze materiality and weight derives from descriptive language, medi- AM: The anthropological discipline shapes my approach to anal- ating this abstraction by recalling that the interviewee is a real ysis through its prioritisation of three things: the thick descrip- person describing real experiences. This mediation allows me tion of the lived experience, the interpretative nature of analysis to temper a first-order formalism, treating the passage as text, and the importance of the encounter of the researcher and the with a second-order ethical imperative, to remember the person

6 Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from behind the text. This play between the formal and the ethical is project, I have become more aware of the epistemological and complicated by two further concerns: identification and context. ontological leaps that this involves, the contingency of many I am trained to reflect on the ways in which readers identify with breath-related diagnoses and measurement, and the potential characters. In relation to the transcript, I am interested in the for addressing breathlessness directly through enhanced under- textual cues that provoke us to empathise with the ‘character’, standing of biopsychosocial interactions. and, by extension, the interviewee, as part of a language world. I am also trained to respond to language as context specific. Since The body historian’s gaze I generally work with language objects that are crafted over time, OW: There are good reasons for keeping clinical practice and my critical tools are ill-adapted to analysis of an interview tran- the writing of its history separate. One compelling reason for script since I grant the precise meaning of the words a greater boundary keeping is that historical thinking can be powerfully significance in developing context (narrative coherence), linking destabilising. Histories of medicine do not reassure practitioners ideas (linguistic parallelisms) and figurative imagining (meta- that they stand on solid ground or that the trajectory of history phor) than might be intended in an interviewee’s spontaneous leads from a benighted past into a knowing present. Is there a reactions to interview questions, no matter how long they might way to use interdisciplinarity, including history, to make clin- take to consider this response. Working with the LoB team, ical practice even better—more effective, more humane— than where the patient voice is granted a centrality, has pushed me it already is? to reflect more on the pragmatics of everyday usage of breath As an historian of medicine and the body, my approach to language than is commonly suggested by literary scholarship on this problem is to consider the many different bodies that are 41 breath as a figural device. found in historical sources. To set these many modes of experience side by side, following Polish-Israeli biologist, physician and philosopher Ludwik Fleck42 in what he called comparative The clinician’s gaze epistemology, allows for a recognition of the ways that our own JD: As a specialist respiratory physician working in a busy experience—usually taken to be the simple fact of the matter—is teaching hospital, I supervise the care of acutely unwell patients precisely situated. Taking seriously both the nature and existence admitted to hospital with lung disease and meet people in of different modes of being a body affords us a form of what outpatient clinic sent to me by their GP and other healthcare David Bohm has called “proprioception of thought”, bringing professionals for assessment and advice about lung disease and contingent givens out of the shadows and into awareness.43 We breathing problems. While medical school and specialist training don’t take “other” models and experiences of the body seriously are grounded in traditional sciences such as physiology and for antiquarian interest, for the construction of a cabinet of biology, a good clinician appreciates that much of what we do curiosities, or even because inclusivity is the right thing to do. is to synthesise subjective and ‘objective’ evidence accumulated We take the actual diversity of ways of being seriously—be they through listening to our patients. We supplement this through bodies and body models, institutions, clinical practices—because physical examination and investigations including imaging and they are the logic from which all that seems given follows. physiological measurements. It is the synthesis of this informa- Holding multiple perspectives need not entail a kind of ground- tion, applied in the psychosocial context of the person sitting less relativism; instead, comparison brings hidden limitations to in front of us, that has long been considered the ‘art’ of medi- light and points the way to new and unexpected possibilities for cine. Much of what is asked of me requires pragmatic output, human flourishing.

in the form of diagnosis, advice on further investigations, moni- http://mh.bmj.com/ toring and treatment. My clinical gaze in reviewing this transcript recognises the tension between the clinicians who develop Discussion these questionnaires, in an attempt to quantify breathlessness in We explore why research into breathlessness may particularly a clinically meaningful way and the almost impossible task of benefit from an interdisciplinary approach. We then conclude capturing the truth of an individual’s experience of breathless- by discussing the wider implications of the findings for inter- ness at any given moment. disciplinary research within health and medicine by referring to

GF: As a GP working in a community-based practice, I am current debates in the literature about the functions, successes on October 1, 2021 by guest. Protected copyright. involved in an initial assessment of new-onset breathlessness, and challenges of collaborative research between the humanities often making a diagnosis and starting treatment. I also encounter and sciences. patients living with chronic breathlessness from lung disease (particularly COPD) or heart failure, as well as patients whose Why is the questionnaire item hard to answer? breathlessness is not based on any structural or physiological Each disciplinary gaze responds to the difficulty the interviewee pathology. The general practice gaze, developed in postgrad- experiences when asked “my breathing requires muscle work and uate training, is explicitly biopsychosocial and this is applied effort”. The literary gaze (AR), paying close attention to what is to patients with new-onset or chronic breathlessness. This spoken, notices how often the interviewee repeats the wording means that when patients present with a problem, my clinical of the questionnaire item, “Doing work”. AR notes that it fails gaze moves back-and-forth between their symptoms and signs, to describe, consistently, his experience of breathlessness. The their emotional state, what I know or find out about their past clinical gaze (JD) likewise notes the interviewee’s frustration and experiences and their current living situation. The biopsycho- the limitations of the questionnaire to “capture breathlessness social gaze that I try to apply in my clinical practice has helped in every situation”. They reflect on the role of questionnaires open me to the diverse perspectives on breathlessness shared in clinical practice and clinician–patient communication about and elaborated in the Life of Breath collaboration. Despite my breathlessness (and its regular absence within primary care). attempting a biopsychosocial understanding of my patients’ The clinical response ‘explains’ what is scientifically known, condition, the languages of the medical body, human emotion pointing out where the interviewee’s telling of his experience and social context are not integrated—I switch between them in differs from what “we clinically know” (eg, the interviewee’s a consultation. Through my involvement in the Life of Breath dismissal of conscious control of breathing governed by higher

Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 7 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from cortical centres). The body historical response describes how the None of these descriptors on the questionnaire seem to cover interviewee’s way of experiencing the breath (and articulating it for him. An interdisciplinary approach to breathlessness has that experience) reveals a certain history about how the breath two tasks. First, to understand how it is that clinical science has and its conscious and unconscious control has been imagined in arrived at the descriptors that the respondent is offered in the science. For the clinician, scientific truth claims cast shadows on questionnaire, and second, to bring interdisciplinary insights the interviewee’s accounts, whereas for the body historian the about experience into dialogue with clinical science to develop ‘powerfully destabilising’ nature of shifting science-truth-claims more effective and accurate ways of helping. means the interviewee’s contradictions and difficulties in being able to answer the question “my breathing requires muscle work Implications for science humanities and effort” are reconciled by a situated historical “logic from In their critical imagining of what medical humanities could which all that seems given follows”. look like, Fitzgerald and Callard (2016) ask the question, what HC, OW and AM note the contradictions in the interviewee’s if disease were not a bodily fact that needed finer interpretation, response, but their disciplinary training encourages an explora- but a way of describing a relation between a body, a history and tion of what is being communicated underneath the interview- an environment?47 In contrast to other interdisciplinary projects ee’s dismissal (and confusion) of the questionnaire wording. For who may come together to share experiential understandings of example, for AM (anthropological gaze), the difficulty answering working practice, for the Life of Breath project, it is the object of the questionnaire item is because breathlessness (like breath) study itself, breathlessness, which embodies multiple disciplines forces the interviewee to consider the conditional inter-relation- and constructs, providing a “shared frame of reference” for the ship between physical and mental phenomena. His very sense of multiple disciplines which make up the Life of Breath team to personhood is undermined by the experience of breathlessness coalesce.48 From the perspective of ‘science humanities’, Willis as he explores ‘who is breathing and who am I when I am strug- (2017) is uneasy with the Life of Breath project’s utilitarian gling to breathe’. The historical turn in ideas of breathing are, approach to knowledge-making, one that is aimed ultimately OW argues, changing stories about the freedom imagined to be at improving the treatment and management of breathless- possible for a human being, each denoting a different kind of ness. Willis views the interests of medical sciences as a type of body and self. “disciplinary restriction (which) can often undermine attempts The clinical gaze compares lay and medical epistemologies at new methodologies which would offer a richer ecology of using the phrase “clinically we know”. There is an expectation 49 knowledge”. Were the objective of the Life of Breath project (from within medicine) that the person can identify the nature of to merely inform greater popular health literacy (eg, to educate the sensation of breathing in a particular physiological function. 50 and promote medical terminologies), we may have been guilty This ‘particularising physiological function’ clearly confused the of our work being in service to a clinical disciplinary restriction. interviewee, raising questions about the nature of the sensation However, our aim is more ambitious, to acknowledge variations of breathlessness, how it is generated and influenced, which in language and differences in cultures of breathlessness as well need unpicking beyond a purely physiological and clinical expla- as the histories of testimonial injustice in lung health; and then nation. One impact of an interdisciplinary effort may be to lay with interdisciplinary insights from the medical humanities and the problematic nature of the questionnaire at the feet of medi- health sciences increase societal awareness and visibility of what cine, rather than at the feet of the ‘unknowing’ patient. breathlessness means, the variability in how it is expressed and how better to provide effective care.51 http://mh.bmj.com/ An interdisciplinary approach to breathlessness For example, members of the Life of Breath project team Being asked to respond from a disciplinary perspective should recently published a letter to the editor of the European Respira- immediately make the interdisciplinarian pause. Perhaps the task tory Journal on renaming breathlessness as ‘Chronic breathlessness syndrome’, in response to a proposal put forward by is not disciplinary (how do scholars from different disciplines 52 respond to the data excerpt differently) but to consider what Miriam Johnson and colleagues in the same issue. The authors disciplines are called into play to interpret and analyse a tran- advocate working towards raising the profile of breathlessness within the palliative clinical encounter so they develop a “truly script of breathlessness. ‘Medical humanities’ does not describe on October 1, 2021 by guest. Protected copyright. a discipline but rather an approach that recognises that the consensual terminology”, involving “experts by experience” in order to legitimise the historical and cultural specific influences biomedical approach to understanding health and ill-health is on perceptions and experiences of breathlessness and avoid insufficient to reveal its complexity and individuality, and that alienating people living with breathlessness.52 If breathlessness we need to draw on wider resources of understanding, partic- is going to be renamed so it has a clearer profile within clinical ularly those that give insights into human experience, located practice, making it easier for patients to discuss their ongoing within diverse histories, cultures, ethnicities, geographies and breathlessness or clinicians to detect undiagnosed breathlessness, political contexts. its renaming needs to take into account breath’s multidiscipli- The starting point for the Life of Breath project collaboration nary nature and lifehood. was the uneasy tension that exists between the personal and the clinical languages of breathlessness44 and the clear evidence of a distinction between measured and experienced symptoms of Conclusion respiratory disease.45 Breathlessness has been recognised as a Describing the work of Life of Breath as being concerned with multidimensional construct involving the perception of sensa- the ‘disrupted songlines of breathlessness’ is a helpful way to tions, thoughts, feelings and behaviours.46 Yet cognitive interview the multicontextual experience of breathlessness as well as views, such as the data excerpt used in this article, show the the necessity of an interdisciplinary approach. A songline is a narratives of patients do not often fit neatly into clinical ques- song used within Australian Aboriginal culture as a way to navi- tionnaire categories. The questionnaires ‘speak’ a different gate across the land. By repeating the words of the songline, language of breathlessness. The interviewee struggles to describe which describe the location of landmarks, the land is traversed. his sensory experience—Is it conscious? Does it feel like work? As songlines span the lands of several different language groups,

8 Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631 Original research Med Humanities: first published as 10.1136/medhum-2018-011631 on 1 August 2019. Downloaded from different parts of the song are said to be in those different 15. Robert B Banzett et al. (2015). Schwartzstein, Paula M. Meek, Richard H. Gracely, and languages. Importantly, for its adoption in relation to breath- Robert W. Lansing. “Multidimensional Dyspnea Profile: an instrument for clinical and lessness, language is not a barrier because the melodic contour laboratory research,” European Respiratory Journal 45, no. 6: 1681–1691 of the song describes the nature of the land over which the song 16. Alice Malpass et al. (2016). “The body says it’: the difficulty of measuring and communicating sensations of breathlessness,” (under review). passes. The rhythm is what is crucial to understanding the song 17. Deborah Padfield et al. (2018). “Images as catalysts for meaning-making in medical and its ability to cross boundaries (of discipline and experience). pain encounters: a multidisciplinary analysis,” Medical humanities: medhum-2017. The interdisciplinarian is best equipped to walk inside (and 18. Bhikkhu Analayo (2004). Sattipatthana: the direct path to realisation. Windhorse alongside) the lands of breathlessness, translating across border- Publications,:131 lands wherever possible as she moves. This is because an inter- 19. Simon Williams (2000). “Chronic illness as biographical disruption or biographical disciplinarian is identifiable by her movement, the willingness disruption as chronic illness? Reflections on a core concept,” Sociology of Health & to depart from her discipline, to not be landlocked by her disci- Illness 22, no. 1: 40. pline’s vantage point. Instead of having shouted conversations 20. Havi Carel (2013). “Bodily doubt,” Journal of Consciousness Studies 20, no. 7–8: 178–197. across borderlands, she must travel the fields of knowledge 21. Margaretta Jolly (2011). “What I never wanted to tell you: therapeutic letter writing in making with an intradisciplinary effort. An effort that acknowl- cultural context,” Journal of Medical Humanities 32, no. 1: 48. edges the critiques of the spatial logic of integration and recog- 22. Ibid, 21. nises that “things do not have inherently determinate boundaries 23. Penny Elspeth and Alice Malpass (2018). “Dear Breath: using story structure to and properties […] rather boundaries are instead things we understand the value of letter writing for those living with breathlessness: a qualitative produce” (p. 40/41)35 across which she must make repeated study,” Arts and Health: International Journal of Research and Practice. crossings. 24. Olivia K. Faull et al. (2018). “Chronic breathlessness: re-thinking the symptom,” European Respiratory Journal 51, no. 1: 1702238. Contributors All authors responded to the data from their disciplinary perspective. 25. H. Carel (2016). Illness: the cry of the flesh. Routledge. The lead author wrote the first draft with comments by coauthors. 26. Havi Carel (2018). “Breathlessness: the rift between objective measurement and subjective experience,” Lancet Respiratory Medicine Funding This study was funded by the Wellcome Trust (grant no. 103340). 27. Arthur Rose et al. (2018). Reading breath in literature Competing interests None declared. 28. Nikolai Sergeevich Trubetzkoy (1969). Principles of phonology: 146. Patient consent for publication Not required. 29. Shigehisa Kuriyama (1999). The expressiveness of the body and the divergence of Ethics approval NRES Ethics approval was granted 10 November 2015 (Research Greek and Chinese medicine. Ethics Committee Reference: 15/EM/0478). 30. V. J. DERBES et al. (1953). “Voluntary death by breath holding” The New England Journal of Medicine 249: 698–699. Provenance and peer review Not commissioned; externally peer reviewed. 31. Roger Smith (2015). Free will and the human sciences in Britain, 1870–1910. Data availability statement Data are available on reasonable request. Routledge, 2015. Nikolai Sergeevich Trubetzkoy (1969). Principles of phonology Open access This is an open access article distributed in accordance with the Berkeley: University of California Press. Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits 32. Charles Darwin. The expression of the emotions in man and animals, Paul Ekman ed. others to copy, redistribute, remix, transform and build upon this work for any second Edition.: 42 purpose, provided the original work is properly cited, a link to the licence is given, 33. Sir Charles Bell (1877) The anatomy and philosophy of expression: as connected with and indication of whether changes were made. See: http://creativecommons.org/ the fine arts. London: George Bell and Sons, York Street, Covent Garden, seventh licenses/by/ 4.0/. edition. 128. 34. Robert Tait McKenzie (1905). “The facial expression of violent effort, breathlessness, Notes and fatigue.” Journal of Anatomy and Physiology 40, no. Pt 1: 51. 1. Charlotte Hardman (2000). Other worlds: notions of self and emotion among the 35. Robert Tait McKenzie (1915). Exercise in education and medicine. WB Saunders http://mh.bmj.com/ Lohorung Rai. (Berg Pub Limited). Company. 2. Nollaig A. Frost et al. (2011). “Collective findings, individual interpretations: an 36. McKenzie (1905). “Facial expression of violent effort,” 53 illustration of a pluralistic approach to qualitative data analysis,” Qualitative Research 37. Sir Charles Bell (1877) Anatomy and philosophy of Expression, 128. in Psychology 8, no. 1: 93 38. Ibid, 128. 3. Martin Willis, Keir Waddington and James Castell (2017). “ScienceHumanities: theory, 39. Stacy M. Carter and Miles Little (2007). “Justifying knowledge, justifying method, politics, practice,” Journal of Literature and Science 10, no. 2:3 taking action: epistemologies, methodologies, and methods in qualitative research.”

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10 Malpass A, et al. Med Humanit 2019;0:1–10. doi:10.1136/medhum-2018-011631